I mentioned yesterday that there is discussion about another possible diagnosis for Owen tied to his respiatory health. In one way, that’s a little daunting. He already is dealing with Severe Bronchopulmonary dysplasia, Tracheomalacia and presumed Asthma (they don’t tend to give an official asthma diagnosis without testing that requires the child to be older). At the same time, I’m a little fascinated by the discussions because it shows what a complex, interrelated system the entire human body is. Also, it potentially gives some answer as to why Owen is STILL on oxygen.
The theory has a lot to do with this picture (it’s not easy to look at so, I’ll give you the opportunity to scroll a little)
Between major operations, drainage tubes and an Ileostomy, I can count at least 8 scars on Owen’s abdomen. The biggest scar that goes horizontally through his midsection has been opened three times. It was also intersected with the vertical scar going down the center of his abdomen. This thick scar tissue makes the muscles around it very difficult for Owen to move, and we suspect, tight and uncomfortable for him to try to use.
It was in physical therapy (PT) where the extent of his scarring impacting his mobility became most clear. It’s not very often that children can pull to standing first, crawl second and still not sit very well. Owen’s PT at Gillette also pointed out that as soon as he gets into sitting, his respiratory rate (number of breaths per minute) increases significantly. She then started talking about how we need to help Owen breathe better to help him with his mobility.
As soon as she said the word breathe, I said let’s start including his Pulmonolgist in these discussions. Last week when I called Pulmonary to discuss Owen’s weight loss, I also explained that she was going to start receiving reports from PT and why. I could hear a little excitement in her voice – she feels PT is onto something. She then gave it a name; Restrictive Lung Disease.
I’ve only had one phone conversation on Restrictive Lung Disease, so please click the link to learn more, but it’s a pretty easy concept. The diagnosis refers to, for any reason, the lungs not being able to expand to their full capacity. As a result, these people tend to breathe shorter and shallower in efforts to keep up with oxygenating the blood. It’s always been known that his scars impacted his muscles and the efficiency of his breathing, but the new concept is that it’s also restricting his ability to take a full breath.
This all makes me wonder – could it be that Owen’s lung tissue is healthy enough for him to no longer need oxygen, and his restricted ability to utilize his lungs is actually why he’s still requiring cannulas? Nobody knows for sure, but it’s a theory that’s being considered
So, what does this all mean for Owen?
- The first step is Owen will start seeing a speech therapist to solely focus on breathing. Breathing is the foundation of talking, so they can help with techniques that might make breathing easier for Owen. There will also likely be some joint sessions with Speech and PT, since the skills are so connected.
- I’m also getting trained on some massage techniques that may help loosen Owen’s scars to improve his mobility of the muscles in that area. This process is like watching grass grow in the desert, but it’s an easy thing to do.
- When we see Owen’s Pulmonologist next month, we will discuss further if/when Owen will have an official diagnosis and how it might change expectations and treatments. In the meantime, Pulmonary is going to bring Owen’s surgeon into the discussion to find out if it would ever make sense to go back in and clean up the scar tissue to give Owen more mobility (I tried not to freak out when I wrote that – didn’t really work).
I’m really excited that we have a team that is being so proactive about Owen’s total health. It’d be easy for PT to just work around the scars – he is meeting his milestones, but instead, she’s been bringing in experts on scars, speech and will be working with Pulmonary, and potentially surgery. There have been a couple of occasions that Katie, Owen’s PT at Gillette Children’s Specialty Healthcare, has called me in the evening to brainstorm around his scars. I don’t know what the end result will be, but I think we are going to get some answers that will help Owen reach his highest potential.
On a week about giving thanks…Owen’s total team is about 100 people to put on the list.© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster